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    Did You Know? (Spring 2017)


    Yvonne (Vonnie) Mostat
    Image Caption: Image: CC--liz west

    Celiac.com 05/19/2017 - Did you know that now, according to Beyond Celiac 83% of those with celiac disease are misdiagnosed or undiagnosed? Did you know that the average time a person waits to be correctly diagnosed, according to Daniel Lefler, M.D., M.S, of the Celiac Center at Beth Israel Deaconness Medical Center is still six to 10 years? This has changed little in the past 10 years, even though celiac disease can lead to a number of other disorders including infertility, reduced bone density, neurological disorders, some cancers, and other autoimmune diseases. Over a four year period, people with undiagnosed celiac disease cost an average of $3,964 more than the healthy individuals (Source: Long et al, 2010.


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    Did you know that 5 - 22% of people with celiac disease have an immediate family member (first degree relative who also has celiac disease, and that there isn't yet a pharmaceutical treatment or cure for it? In 2009 WebMD reported that, in the USA, celiac disease has quadrupled over the last 50 years, yet many people who have the disease remain undiagnosed. Still Dr. Stefano Guandalini, N.D. Director of the Celiac Disease Center at the University of Chicago told WebMD, "Many of these people have no symptoms, but many do have symptoms that are not recognized for what they are. We believe that only five percent of people with celiac disease know they have it".

    Is there any wonder that a woman at the dietician's office at our local hospital where I sometimes volunteer did not know she had celiac disease? This is because she was only experiencing symptoms of joint and muscle pains, abdominal pain and laboratory tests only showed anemia. She was first referred to an orthopedic specialist, then an internist, and neither checked for celiac disease or questioned her further. "Hello!!" Are there still general practitioners out there who are not aware that there is a blood test for celiac disease?

    Some people experience symptoms found in celiac disease such as a "brain fog," depression, ADHD like behavior, abdominal pain, bloating, diarrhea, constipation, headaches, bone or joint pain, and chronic fatigue when they have gluten in their diet, yet do not test positive for celiac disease. The terms non-celiac gluten sensitivity (NCGS) and non-celiac wheat sensitivity (NCWS) are generally used to refer to this condition. When removing gluten from their diet it removes symptoms. At my first biopsy of the bowel the gastroenterologist failed to biopsy the jejunum. My blood test was positive, the biopsy of the dermatitis herpetiformis proved positive too, and it wasn't until I insisted on a second biopsy of my jejunum that I was diagnosed. If I had not been persistent, I would have given up after the first biopsy and continued itching and ingesting gluten. Persistence, or stubborn determination (i.e. knowing my own body) paid off, but it took a year for the dermatitis herpetiformis to totally rescind, most particularly the sores on my scalp.

    You know your own body better than anyone; you know when something is wrong. If your grocery store fails to give you good service you go elsewhere. The Celiac Disease Foundation, both in Canada and the United States, can help you find the right doctor to discuss your symptoms so you can get diagnosed and treated. Shop and find your own healthcare practitioner. Do not allow a doctor tell you that you are neurotic, perimenopausal, or their favorite: "stressed." Since there are more than 200 known celiac disease symptoms which may occur in the digestive system or other parts of the body, and some people develop celiac disease as a child, others as an adult, you owe it to yourself to keep checking and researching and reading magazines like Celiac.com's Journal of Gluten Sensitivity, because, according to the Mayo Clinic, there is no cure for celiac disease.

    The American Journal of Gastroenterology, at ScienceDirect.com, offers a nationwide view of celiac disease, and conducted two randomized trials that tested strategies of early or delayed gluten introduction in infants, and neither strategy appeared to influence the risk for celiac disease. They also indicated that breastfeeding did not protect against celiac disease. "While disappointing, these results should spur the study of wider environmental risk factors beyond infant feeding, such as intrauterine and perinatal exposure as well as environmental influences later in life, including drug exposure, microbial infections, and the mictobionme. Given that celiac disease can develop at any age, it is imperative to study these proposed triggers so as to elucidate the loss of tolerance to gluten and to develop future intervention strategies."

    At the start of the Gastroenterology study, between 2000 and 2001 - 11.1 out of every 100,000 people had celiac disease. Toward the end of the study - between 2008 and 2010 it was up to 17.3 out of every 100,000 people. However, researchers noted that the incidence of celiac disease plateaued after 2004. It is no big surprise that they believe, according to Dr. Stefano Guandalini, M.D. "that only about 5 percent of people with celiac disease know they have it." Web MD reported that "Celiac Disease had quadrupled." Many physicians I approached whilst completing this survey indicated it was physician knowledge of the signs and symptoms of celiac disease that has caused a greater increase in celiac testing and the use of a simple blood test (tTG-IgA). The Tissue Transglutaminase Antibodies test will be positive in about 98% of patients with celiac disease who are on a gluten-containing diet. The same test will come back negative in about 98% of healthy people without celiac disease. Although rare, patients with celiac disease could have a negative antibody test result. There is also a slight risk of a false positive test result, especially for people with associated autoimmune disorders like Type 1 Diabetes, autoimmune liver disease, Hashimoto's thyroiditis, psoriatic or rheumatoid arthritis, and heart failure. This test is not good for someone who has been following a gluten-fre diet on their own.

    A biopsy of the small intestine is still considered the only way to diagnose celiac disease by many doctors. Many parents are reluctant to submit their young child to a biopsy of the Jejeunum and have used only blood tests, including the IgA Endomysial antibody (EMA). This test has a specificity of almost 100% but it is not as sensitive as the tTG-IGA test, because about 10% of people with celiac disease do not have a positive EMA test. Also, it is VERY expensive in comparison to the tTG-IgA and it requires the use of primate esophagus or human umbilical cord, so it is usually reserved for difficult to diagnose patients. The Total Serum IgA is used to test for IgA deficiency, a condition associated with celiac disease that can cause a false negative tTC-IgA or EMA result. If you are IgA deficient, our doctor can order a DGP or tTg-IgC.

    The decimated gliadin peptide (DGP-IgA and IgG) is a test that can be used to further screen for celiac disease in individuals with IgA deficiency or people who test negative for tTg or EMA antibodies. Even though it is very rare, it is possible for someone with celiac disease to have negative antibody test results. So please do not become discouraged even with negative results, if you are still experiencing symptoms talk with your physician and undergo further medical evaluation. Keep in mind that some of these tests are not medically covered by insurance.

    Did you know that you can get genetic testing for celiac disease? People with celiac disease carry one or both of the HLA DQ2 and DQ8 genes. So do up to 25 - 30% of all people. Carrying HLA DQ2 and/or DQ8 is not a diagnosis of celiac disease, nor does it mean you will ever develop celiac disease. However, if you carry HLA DQ2 and/or DQ8 your risk of developing celiac disease is 3% instead of the general population risk of 1%.

    Since celiac disease is genetic this means it runs in families. First degree family members (parents, siblings, children) who have the same genotype as the family member with celiac disease, have up to a 40% risk of developing celiac disease. The overall risk of developing celiac diseases when the genotype is unknown is 7% to 20%, which is a big difference!

    We cannot blame ALL physicians for the lack of a correct diagnosis. It is one of the most puzzling, multi-faceted diseases, and a patient going into their family physician's office may have very vague symptoms. Thousands of dollars may be spent on blood tests, referrals to specialists, x-rays, and scans before a diagnosis is found. There is nothing more deflating or frustrating to someone who has a myriad of legitimate symptoms than to be told that they are either depressed, stressed or suffering from an overactive imagination.

    Sources:


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    Yvonne (Vonnie) Mostat
    Celiac.com 03/01/2016 - Did you know that even products all scientists agree to be safe may not be because when researchers experiment in a contained laboratory, they find the product to be safe...and we believe them don't we? The reality is, several of those products, like quinoa and buckwheat can often be cross-contaminated because they are processed and packaged in plants that also process regular wheat. If you visit one of these facilities and see the flour dust everywhere you will notice workers in white coats and masks to prevent dust inhalation. The employees look like they are walking around in astronaut suits, and it becomes clear that anything else processed in that plant could be contaminated with wheat.
    Whenever you have the choice to pick foods that come from facilities that are 100% dedicated gluten-free you should take it. Some foods, like Pamela's and Bob's Red Mill actually test their products twice for gluten. King Arthur Gluten Free Flour say that they test and re-test their entire line of gluten-free products, and have an on-line chat with the baker's hot line: 855-371-2253. Namaste Foods also have their gluten-free foods made in a dedicated facility that is free of gluten, wheat, soy, corn, potato, peanuts, tree nuts, dairy and casein. 1-2-3 Gluten-Free Products state "Made in a dedicated allergen-free facility (NO gluten, wheat, dairy, casein, peanuts, tree nuts, eggs and soy)." Don't just check whether an item is gluten or wheat-free, check whether it is made in a dedicated facility.
    It makes sense that companies that manufacture their products in a dedicated facility may price their products a little higher, and the cost will likely be passed on to the consumer. Pro-Cert indicates that while the expense to produce products under these dedicated protocols offers little versatility from year to year, because it is a closed loop system, but consumers shouldn't expect huge spikes in the price that never come down and only go up. I dream of the day when all gluten-free products will be made in dedicated facilities!
    Dedicated Facilities that Produce Gluten-free Oats
    Montana Mills
    Gluten-free purity protocol confirmed July 17, 2015. Oats are planted only on fields that have grown gluten-free grains for four years. Pure gluten-free seeds are planted. Fields are hand-rogued (You do know what roguing is don't you? Another grain flies in on the wind, or is trampled under foot from another field. Fairly easy to spot in the field of ripened wheat the farmers in my husband's family tell me.) to eliminate possible contamination. The grower is responsible for roguing, but is inspected by a Montana Mills inspector prior to harvest to ensure roguing was thorough and the fields are clean. Oats are transported in certified clean dedicated equipment to a dedicated facility. Redundant Elisa R5 testing is conducted before and after processing. Since 2012 Montana Mills uses the Elisa G12 approved testing.
    Avenin Foods
    Current gluten-free purity protocol confirmed July 21, 2015. They use only pedigree seeds. Growers attend workshops to learn requirements for gluten-free oats. Fields used to grow gluten-free are required to follow a specified crop rotation protocol. The fields are surrounded by isolated strips. All machinery and equipment is either cleaned or dedicated. All oats are processed in a dedicated gluten-free facility. Oats are tested using R5 Elisa 5 methadology.
    Ice Cream Slip Up
    I became very ill two weeks ago upon purchasing a soft ice cream, in a bowl of course, from a new store near our home. I should have realized that Wadden System Frozen Treats (www.icecreamflavors.com) coming from one machine but making over 20 flavors of ice cream, came from a flavor syrup that was added to the plain vanilla in the machine and that is how they got the flavored colors of ice cream. It contained wheat, and being a bit of a pig over ice cream I ordered a medium.
    The nausea came first, then the diarrhea. Within twenty-four hours my scalp was covered in dermatitis herpetiformis lesions, water filled blisters that beg to be itched, and when you comply the burning in your scalp and thighs makes you so miserable you wished you had never even thought of ice cream! I went back of course, and I e-mailed the Wadden Company and suggested they notify the franchise people of what the bottles of flavorings contain. This did not help my illness or itching though, but we learn, oh goodness I hope I learn!
    If a food allergen isn't labeled with all the proper food allergens and makes its
    way into the store shelves, the food may be subject to a recall according to FALCPA (Food Allergen Labeling and Consumer Protection Act of 2004) requirements, and you can report such foods. "Get the Facts", the USDA, U.S. Department of Agriculture, list the new allergen labeling laws that include the top eight food allergens.
    Double Check these Foods
    Imitation Sea Foods, such as imitation crab meat, imitation bacon bits, licorice, flavored coffees and teas, processed foods, some chocolates and bars, salad dressings, hot dogs, sausages, deli-meats, sauces, marinades, seasonings, and soy sauce.
    Medications
    Do what I did, take the form provided by the National Celiac Association for Pharmacists to your pharmacy and tell them you are either a celiac or gluten sensitive and ask them to find out if your medications contain gluten.
    Gluten-Free Oats
    The Gluten Free Watchdog supports the use of gluten-free oats by the celiac disease community that are produced under a purity protocol. At this time we do not support the use of regular oats that are cleaned at the "end" of production via mechanical and/or optical sorting to be "gluten free". Before we can support the use of oats "cleaned" in this manner to be gluten-free we must be provided with thorough testing data. We can then compare this data to the thorough testing data provided to us for oats grown under a purity protocol."
    The Gluten Free Watchdog, who work very hard to keep pushing companies with regards to the safety of oats, had a meeting with General Mills in July to discuss gluten-free Cheerios. Those involved with testing of the oats in Cheerios—Medallion Labs were also present. Marshall Gluten Free Milling and Pro-Cert, (Michael Marshall, President and CEO of Marshall Gluten Free Milling (www.glutenfreemilling.com) sent the Gluten Free Watchdog a letter indicating that they knew it was time to make a difference in a segment of the marketplace that needs some help. What does Marshall Gluten Free Milling do? They are the world's first company that provides ingredients to manufacturers that are produced on third party Certified Gluten Free FARMS by Pro-Cert a worldwide leader in third party organic certification.
    It is a program that closely mirrors organic certification. Each farm must be free from gluten-containing products for two full years and on the third year of production the crops can be marketed. No gluten-containing product can be stored, handled, transported or conveyed with any infrastructure or equipment on the farm. Marshall gluten-free Milling Staff then control the dedicated trucking to a gluten-free only certified cleaning facility where the product is cleaned and sized to maximize quality. The oats are then shipped in a dedicated gluten-free truck to a third party certified gluten-free mill (GFCO, Pro-Cert, etc.). So the mill, cleaner and farm are all certified. The crops available right now on this program are organic oats and flax. Interest has spread to non-organic producers as well. They are expanding their offerings to lentils, peas and possibly quinoa. They need a sustainable crop rotation for the producers in the program. Primarily right now the focus of their ingredient marketing is oats as this is where the 3rd party certification of the farm is most crucial to developing a sustainable gluten-free crop rotation.
    Michael Marshall was asked about General Mills announcing that five varieties of Cheerios were to be labeled gluten-free. The company is using regular oats cleaned at the "end" of production via mechanical separation. According to General Mills there are not enough oats grown under a purity protocol to produce Cheerios. He was asked, based on his industry experience, did he feel that mechanical/optical sorting was sufficient to ensure the gluten-free status of oats. He stated that General Mills was a trusted brand who value their name, and have done their homework on the process. But he also stated that mechanical and optical sorting equipment has been used for quality control for years as well as for food safety precautions. It is not new idea, has come a long way, but he thinks that even General Mills would have to agree it does not reduce the risk to zero. Michael Marshall is concerned about the dust control system used by General Mills. In his opinion, contaminated conventional low cost oats in gluten-free foods is risky.
    After Tricia Thompson of the Gluten Free Watchdog asked if his program guaranteed 100% pure gluten-free oats? He said, "Generally speaking, there are always going to be anomalies." However if you look at the protocols in our program there are standard operating procedures in place. These procedures include: Planting seeds that are verified pure. Using only gluten-free planting equipment. Using buffer strips around the field – At harvest, the crop within the buffer strip cannot be binned with the gluten-free product—this protects the gluten-free crop from outside contamination. Strip testing every load that comes off the field before it is binned. Sending a representing sample from every bin to the lab for testing using the R5ELISA R7001 assay (testing prior to the crop being shipped to the mill. Testing at the mill before the crop is unloaded. The bottom line being they are testing at various steps to find gluten through the entire production of the crop to mitigate or eliminate the risk of contamination before it even gets to the mill. Once at the mill hi-tech sorting or mechanical separation will be for quality versus the only fail-safe measure to assure removal of gluten. The farm will be required to be certified gluten-free by Pro-Cert. They have 25,000 acres of both organic and conventional farmland under the certification program that will be available for the market this October. There are farmers lining up to get on the program and they have not even marketed it yet. It is a big market to supply and I believe we can all benefit.
    Of course they want to follow safety guidelines! The celiac population is big business and I thank the Gluten Free Watchdog for working to develop a safety protocol for oats and working hard to obtain purity so that we can safely eat food without getting sick. But I know there will be a price to be paid for purity and safety, and it has to be passed on to the consumer, and I think there should be more tax breaks for the celiac population. AND, that is another place that the Gluten Free Watchdog and FALCPA (Food Allergen Labeling and Consumer Protection Act of 2004) can help us with keeping the costs down. No-one should have to be penalized out of their pocketbook for having a gluten sensitivity or severe gluten allergy.
    My goodness, in Great Britain tax breaks are considerable for anyone who has diabetes, celiac disease or many notable food allergies. They do not decide that you have to use a certain medication, a generic brand, because the brand prescribed by your doctor is not listed under Pharmacare like they do in British Columbia, and, in Great Britain, as soon as a woman becomes pregnant she receives free vitamins for her unborn baby and all costs during her pregnancy are covered by their Medical Insurance Coverage. Dental, glasses, and money for diapers and a clothing allowance for the first three months of the babies life are paid for. We in the United States and Canada are so far behind Europe and the Great Britain in our health coverage. I think as a celiac and somone who has multiple allergies that require severe diets, some assistance and tax adjustments should be available more than the paltry difficult to monitor cost adjustment program that is in place today in our two countries! I know, my "Bandwagon", but one you should get on board too, and so should the NFCA.

    Yvonne (Vonnie) Mostat
    Celiac.com 05/19/2017 - Did you know that now, according to Beyond Celiac 83% of those with celiac disease are misdiagnosed or undiagnosed? Did you know that the average time a person waits to be correctly diagnosed, according to Daniel Lefler, M.D., M.S, of the Celiac Center at Beth Israel Deaconness Medical Center is still six to 10 years? This has changed little in the past 10 years, even though celiac disease can lead to a number of other disorders including infertility, reduced bone density, neurological disorders, some cancers, and other autoimmune diseases. Over a four year period, people with undiagnosed celiac disease cost an average of $3,964 more than the healthy individuals (Source: Long et al, 2010.
    Did you know that 5 - 22% of people with celiac disease have an immediate family member (first degree relative who also has celiac disease, and that there isn't yet a pharmaceutical treatment or cure for it? In 2009 WebMD reported that, in the USA, celiac disease has quadrupled over the last 50 years, yet many people who have the disease remain undiagnosed. Still Dr. Stefano Guandalini, N.D. Director of the Celiac Disease Center at the University of Chicago told WebMD, "Many of these people have no symptoms, but many do have symptoms that are not recognized for what they are. We believe that only five percent of people with celiac disease know they have it".
    Is there any wonder that a woman at the dietician's office at our local hospital where I sometimes volunteer did not know she had celiac disease? This is because she was only experiencing symptoms of joint and muscle pains, abdominal pain and laboratory tests only showed anemia. She was first referred to an orthopedic specialist, then an internist, and neither checked for celiac disease or questioned her further. "Hello!!" Are there still general practitioners out there who are not aware that there is a blood test for celiac disease?
    Some people experience symptoms found in celiac disease such as a "brain fog," depression, ADHD like behavior, abdominal pain, bloating, diarrhea, constipation, headaches, bone or joint pain, and chronic fatigue when they have gluten in their diet, yet do not test positive for celiac disease. The terms non-celiac gluten sensitivity (NCGS) and non-celiac wheat sensitivity (NCWS) are generally used to refer to this condition. When removing gluten from their diet it removes symptoms. At my first biopsy of the bowel the gastroenterologist failed to biopsy the jejunum. My blood test was positive, the biopsy of the dermatitis herpetiformis proved positive too, and it wasn't until I insisted on a second biopsy of my jejunum that I was diagnosed. If I had not been persistent, I would have given up after the first biopsy and continued itching and ingesting gluten. Persistence, or stubborn determination (i.e. knowing my own body) paid off, but it took a year for the dermatitis herpetiformis to totally rescind, most particularly the sores on my scalp.
    You know your own body better than anyone; you know when something is wrong. If your grocery store fails to give you good service you go elsewhere. The Celiac Disease Foundation, both in Canada and the United States, can help you find the right doctor to discuss your symptoms so you can get diagnosed and treated. Shop and find your own healthcare practitioner. Do not allow a doctor tell you that you are neurotic, perimenopausal, or their favorite: "stressed." Since there are more than 200 known celiac disease symptoms which may occur in the digestive system or other parts of the body, and some people develop celiac disease as a child, others as an adult, you owe it to yourself to keep checking and researching and reading magazines like Celiac.com's Journal of Gluten Sensitivity, because, according to the Mayo Clinic, there is no cure for celiac disease.
    The American Journal of Gastroenterology, at ScienceDirect.com, offers a nationwide view of celiac disease, and conducted two randomized trials that tested strategies of early or delayed gluten introduction in infants, and neither strategy appeared to influence the risk for celiac disease. They also indicated that breastfeeding did not protect against celiac disease. "While disappointing, these results should spur the study of wider environmental risk factors beyond infant feeding, such as intrauterine and perinatal exposure as well as environmental influences later in life, including drug exposure, microbial infections, and the mictobionme. Given that celiac disease can develop at any age, it is imperative to study these proposed triggers so as to elucidate the loss of tolerance to gluten and to develop future intervention strategies."
    At the start of the Gastroenterology study, between 2000 and 2001 - 11.1 out of every 100,000 people had celiac disease. Toward the end of the study - between 2008 and 2010 it was up to 17.3 out of every 100,000 people. However, researchers noted that the incidence of celiac disease plateaued after 2004. It is no big surprise that they believe, according to Dr. Stefano Guandalini, M.D. "that only about 5 percent of people with celiac disease know they have it." Web MD reported that "Celiac Disease had quadrupled." Many physicians I approached whilst completing this survey indicated it was physician knowledge of the signs and symptoms of celiac disease that has caused a greater increase in celiac testing and the use of a simple blood test (tTG-IgA). The Tissue Transglutaminase Antibodies test will be positive in about 98% of patients with celiac disease who are on a gluten-containing diet. The same test will come back negative in about 98% of healthy people without celiac disease. Although rare, patients with celiac disease could have a negative antibody test result. There is also a slight risk of a false positive test result, especially for people with associated autoimmune disorders like Type 1 Diabetes, autoimmune liver disease, Hashimoto's thyroiditis, psoriatic or rheumatoid arthritis, and heart failure. This test is not good for someone who has been following a gluten-fre diet on their own.
    A biopsy of the small intestine is still considered the only way to diagnose celiac disease by many doctors. Many parents are reluctant to submit their young child to a biopsy of the Jejeunum and have used only blood tests, including the IgA Endomysial antibody (EMA). This test has a specificity of almost 100% but it is not as sensitive as the tTG-IGA test, because about 10% of people with celiac disease do not have a positive EMA test. Also, it is VERY expensive in comparison to the tTG-IgA and it requires the use of primate esophagus or human umbilical cord, so it is usually reserved for difficult to diagnose patients. The Total Serum IgA is used to test for IgA deficiency, a condition associated with celiac disease that can cause a false negative tTC-IgA or EMA result. If you are IgA deficient, our doctor can order a DGP or tTg-IgC.
    The decimated gliadin peptide (DGP-IgA and IgG) is a test that can be used to further screen for celiac disease in individuals with IgA deficiency or people who test negative for tTg or EMA antibodies. Even though it is very rare, it is possible for someone with celiac disease to have negative antibody test results. So please do not become discouraged even with negative results, if you are still experiencing symptoms talk with your physician and undergo further medical evaluation. Keep in mind that some of these tests are not medically covered by insurance.
    Did you know that you can get genetic testing for celiac disease? People with celiac disease carry one or both of the HLA DQ2 and DQ8 genes. So do up to 25 - 30% of all people. Carrying HLA DQ2 and/or DQ8 is not a diagnosis of celiac disease, nor does it mean you will ever develop celiac disease. However, if you carry HLA DQ2 and/or DQ8 your risk of developing celiac disease is 3% instead of the general population risk of 1%.
    Since celiac disease is genetic this means it runs in families. First degree family members (parents, siblings, children) who have the same genotype as the family member with celiac disease, have up to a 40% risk of developing celiac disease. The overall risk of developing celiac diseases when the genotype is unknown is 7% to 20%, which is a big difference!
    We cannot blame ALL physicians for the lack of a correct diagnosis. It is one of the most puzzling, multi-faceted diseases, and a patient going into their family physician's office may have very vague symptoms. Thousands of dollars may be spent on blood tests, referrals to specialists, x-rays, and scans before a diagnosis is found. There is nothing more deflating or frustrating to someone who has a myriad of legitimate symptoms than to be told that they are either depressed, stressed or suffering from an overactive imagination.
    Sources:
    The American Journal of Gastroenterology https://celiac.org http://www.beyondceliac.org 

    Yvonne (Vonnie) Mostat
    Celiac.com 03/02/2018 - When I was diagnosed as having celiac disease with severe dermatitis herpetiformis (DH) I was told that the diet was difficult to follow and I would have to be vigilant or Dapsone would not relieve the itching. I suffered abdominal pain, outbreaks of sores, anaemia, and, (big swallow) the horrible bowel disorders. I came out of the dermatologist's office with a prescription for Dapsone to treat the attack of sores on my scalp, on my arms and thighs, along with a slip of paper referring me to the dietician at our local hospital. But that was years ago. My journey has been an ongoing trial of trial and error.
    I was just discharged from hospital again, my third occasion in ICU within the past year. I have been told I am the only person in Langley who can wear that crown, the one of having Methemoglobinemia. {lucky me!}
    This could happen to any celiac with dermatitis herpetiformis who takes Dapsone. And anyone regularly eating packaged meats or bacon, for instance, along with having Zylocaine injections, is at significant risk of methemoglobinemia as well. A person with celiac disease may or may not have dermatitis herpetiformis. Many celiacs go their entire lives without a DH spot on their bodies {you Lucky people}.
    I have learned a lot in this past two weeks, both while hospitalized and from subsequent research, about the reasons it happened and the dangers of it happening to me again. I can never have more than one Dapsone again and I must now have methemoglobinemia tests done every six weeks. It is likely that they cannot use Methylene Blue to treat me again, unless I am at a critical point, because of the danger of the poison still being in my system.
    **A little lesson here on methemoglobinemia:
    Hemoglobin is the molecule in red blood cells that distributes oxygen to the body.
    Methhemoglobinemia can either be inherited or acquired. It is a blood disorder in which an abnormal amount of methemoglobin, a form of hemoglobin, is produced. Methemoglobin cannot release oxygen.
    There are two forms of Methemoglobinemia. The acquired form is caused by exposure to some chemicals and/or drugs and is thought to be more common than those that are inherited.
    Chemicals and drugs that trigger methhemoglobinemia include:
    Anaesthetics such as benzocaine and Xylocaine Benzene Certain antibiotics {including Dapsone and chloroquine} Moi! Nitrites {used as additives to prevent meat from spoiling)!! There are two sub-groups of inherited methemoglobinemia, type 1 and type 2.
    The symptoms of acquired methemoglobinemia include:
    bluish coloring of the skin headache fatigue I did not get "bluish coloring of the skin", even though I was hospitalized on three occasions with this condition and was asked about it repeatedly. I did get full frontal, severe headaches, and I did experience breathlessness when climbing stairs. I had to stop at the top of our the stairs in our home to catch my breath. My most recent admission to the Emergency Department was after such an experience. I was really out of breath, had chest pain, and my headache was so severe that I told my husband that I thought that methemoglobinemia was coming back again.
    I made the mistake of following a physician's instructions - some don't seem to know that this condition can become critical.
    The admissions last year were because I had two of the diagnostic criteria for Type II methemoglobinemia. I had a trapped nerve in my neck and my husband had been trained to give me Zylocaine injections to alleviate severe stabbing pains just above my right eyebrow. (The nerve travels over the head to just above the eye.)
    I had been told that when I was in the throes of a dermatitis herpetiformis outbreak I could go 5 - 4 - 3 - 2 - 1 with Dapsone and Prednisone. On the first day I took 5 tablets, the second day 4 tablets, and so on. If the spots kept re-occurring then I was to follow the same procedure once more.
    When I was discharged last year I was not told to change that protocol. In February, I found myself inundated with dermatitis herpetiformis spots all over the back of my head, backs of my arms and shins. I was conservative in my approach to Dapsone and took only Three Dapsone tablets on two successive days.
    This set me on the path to another hospital admission. I could not climb our stairs without leg pains and becoming breathless. I had frontal headaches and just "did not feel well".
    On one of my last admissions to the intensive care unit, my methemoglobinemia was 29 and the Internist treating me said that if I had sat at home with my oxygen bottle for another week my methemoglobinemia scale could have climbed to 35 which usually means death.
    What to do if you develop the same symptoms: Call your health care provider or emergency services (911) immediately if you have severe shortness of breath and you have previously experienced methemoglobinemia.
    Prevention: Genetic counseling is recommended for couples with a family history of methemoglobinemia who are considering having children.
    After this most recent outbreak of DH I was determined to find out what had caused this last admission to hospital. It was not fun to have my blood drawn daily. Neither was it fun to have the phlebotomist coming in to draw blood gases from my wrist (ouch!) also daily. It was scary when they told me that my hemoglobin was declining daily and when it hit 80 they started the IV drip of two units of packed red cells again.
    They did not do the Methylane Blue flushing during this admission because my methemoglobin was 11, not 17 or 29. Methylane Blue is a poison and they had to check with St. Paul's Hospital in Vancouver in order to determine the amount to be used on this little body. Plus they cannot keep doing this poisonous flushing every nine months. I was told this by a specialist wearing his sternest facial expression, obviously in order to scare me.
    Who knows what amounts still stay in the system? Methylene blue may be dangerous to patients who have or may be at risk for a blood disease called G68PD deficiency and should not be used by them. If you or your child has G6PD deficiency, always tell your health care provider before receiving treatment.
    Another interesting note is that ascorbic acid can also be used to reduce the level of methemoglobin. I don't know much ascorbic acid is required but I intend to find out. Oranges contain ascorbic acid do they not? The normal methemoglobinemia scale is about minus 0.1. Mine seems to stay at about 3.
    This specialist physician also told me that I could no longer increase my dosage of Dapsone. It has to stay at one per day no matter how severe the outbreak. I must also take Cimetidine, a drug that is usually used to control excess stomach acid. It helps to reduce the impact of Dapsone on methemoglobin.
    Dapsone is the dangerous drug for methemoglobinemia, and Zylocaine injections also pose similar dangers. After my admission to hospital last May, I found out that phosphates can also add to the level of methemoglobin. There are phosphates in packaged meats, with lots of those little guys in bacon and cured ham. Were I to double up on Dapsone because of a particularly bad DH outbreak, have a few injections of Zylocaine, then add some back bacon and packaged cold cuts, I might well be back in hospital with elevated levels of methemoglobin.
    This time I also discovered that phosphates are sometimes in chewing gum, malted milk drinks, drinking chocolate, baked beans, instant coffee, curry powder, white pepper, some lipsticks, gravy browning, self basting turkeys, brown rice syrup, supplements and, of course, luncheon meats.
    Fifteen years ago I was told I could use Atarax for the itch. Now they tell me that this drug is not only very sedating, thus slowing the heart down considerably, it is a poison that can cause tardive dyskinesia, a potentially irreversible form of brain damage. Again, fifteen years ago it caused me to experience facial gesticulations, tongue protrusion, hands that trembled and a speech pattern that often defied translation. That was because I was wrongly prescribed Loxapine for the itch, and along with Atarax, it ruined my life forever.
    Misunderstandings persist. Celiac disease can look like Crohn's disease. It can look like colitis. It can look like irritable bowel disease, and because physicians have been taught that celiac disease is very rare and they often simply write it off as irritable bowel syndrome when they cannot find the cause of a GI problem. They forget that it could be celiac disease. It is just under-diagnosed, and peri-menopausal women suffer the most because they are often labeled as "depressive", or worse yet, "neurotic". I was told when working as a nurse that "irritable bowel" often meant "we just don't know".
    The world has yet to define a universal "gluten-free" standard. For international trade purposes, the Codex (WHO - World Health Organization), Committee on Nutrition and Foods for Special Dietary Uses is in the process of revising their standards. At this time they are unable to reach a consensus. {Hey, this has been since 2008 and it's already 2012! What do they do at these Forums?} The Food Allergen Labeling and Consumer Protection Act (FALCPA) has committed to defining "gluten-free" for labeling purposes by 2008. We still do not have a World standard. FDA (Food and Drug Administration) acknowledges that the situation needs to be rectified and it has made a start by including gluten with other major allergens in their ingredient disclosure requirements.
    The greatest progress is among the health declarations on restaurant menus and whole foods markets. Wal-Mart have also cast their lot with this group, establishing entire sections dedicated to gluten-free foods. We are finally starting to get rid of ‘stealth glutens' - those in flavor carriers, binders, fillers and emulsifiers, and used in everything from salad dressings to self-basting turkeys. We have come a long way, but we still have miles to go in reforming the food industry. As a waiter said to my friend when she told him she has celiac disease: "We don't serve fish in our restaurant, in fact we have nothing out of the sea".
    References:
    DeBaun, MR - Frei-Jones M Vichinsky E Hereditary methemoglobinemia in Kliegmann RM, Behrmann RE, Jenson HB, Stanton BF, eds. Nelson Textbook of Pediatrics 19th ed. Philadelphia. PA Saunders, Fernandez Frackelton M Bocock, J. Cyanosis In: Marx JA, Hockberger RS, Walls RM, et al, eds. Rosen's Emergency Medicine Concepts and Clinical Practice 7th ed. Philadelphia, Pa, Mosby Elsevier; 2009, chap, 29. "Keeping Food Safety in the Mix: Food Safety in Grain Based Foods and Bakery Products" Gluten-Free Formulation, Kim Decker

    Yvonne (Vonnie) Mostat
    Celiac.com 03/23/2018 - I should probably add severe dermatitis herpetiformis to that title. It was numerous doctors' guessing games, a medical misadventure, and years of improper eating that led to my arrival at "severe". I often wonder why 'misadventure' was the legal term they used to describe a doctor giving me a neuroleptic drug for "spots". After all, there was no adventure in what occurred and the only thing that was 'missed' was the correct diagnosis. But my tale is one of a beginner's trials. I described my medical 'misadventure' in a previous issue. Perhaps this article could be called "The Perils of Pauline" if my name was Pauline.
    When I was diagnosed with celiac disease and severe dermatitis herpetiformis (DH) I was told that the diet was very difficult to follow and I would have to be vigilant or Dapsone might not stand in the gap as my savior from the itching, I was told that I would suffer abdominal pain, outbreaks of sores, anemia, and, (big swallow) horrible bowel disorders.
    About ten years ago I submitted an article about celiac disease and DH to a magazine. I was told that nobody wants to hear about 'bowels'. Thank goodness times have changed and we now have our own magazine. I can use terms like "flattened villi", "flatulence" and "stools", and know that you understand the need to discuss these issues.
    Early in this process, I left my dermatologist's office with a prescription for Dapsone to treat the attack of sores on my scalp, my arms, and thighs, and a slip of paper directing me to see the dietitian at our local hospital. I was told to avoid "wheat", which meant avoiding bread and bread products. "Duh!" I went home, had a bowl of Campbell's Mushroom Soup and thought "I can do this. I am a nurse after all. It won't be long before these sores have cleared up, I can gain weight, my nails will grow again, and I will stop this blessed itching" (Why do we say "blessed" when we mean a swear word?)
    I was on such high doses of Dapsone and the sores cleared up but what a price my body paid! We continued using the same toaster. (Goodness what is a crumb after all?) The more I traversed this "adventure" the more I found flour, or to be precise GLUTEN in almost everything I ate, liked, or touched.
    I visited the dietitian at our hospital after weeks of waiting, and she was curious to see the sores on my scalp, never having seen dermatitis herpetiformis before! Her file on celiac disease was smaller than the one that I had started to develop. I am embarrassed to say, as a nurse and writer, that I did not search the Internet for help during those first months. The dietitian was my only resource. I did not know anyone with celiac disease. And dermatitis herpetiformis was something I did not want to tell anyone about. It sounded contagious to me.
    Some of the 'shockers' to me, the person who thought the gluten free diet was going to be a piece of cake were simple things and stupid things. Some of the words I was frequently saying were "I just did not think gluten would be in that!" and "I did not think to read that!" and, "Who would have thought?" Certainly not me!
    That first Christmas someone bought us a bottle of Irish Cream Liqueur, a thing we seldom imbibe. Again, not thinking, I used it in coffee for a drink after Christmas dinner and "wondered" why I had diarrhea the next day and why DH spots appeared on my scalp.
    Food surprises: Oh my, such a lot of them. McDonald's French fries are not French fries. They are reconstituted flours, lard and "some" incidental potato products. My favorite, Costco fries, were hardly fries at all. They contained a lot of flour, which I suppose gave them the crunchy texture that I loved and paid dearly for afterward. I found out that most sausages contained toasted bread crumbs, as did sausage meat. Processed hamburger patties, big surprise, also contained toasted bread crumbs. I finally found that one can get sausages labeled gluten free, with that wonderful little "Wheat Sign" that I was learning to look for. Milk shakes? Oh, come on! Milk and ice cream... right? Not necessarily because not all ice creams are the same, some actually contain wheat germ or other grains used as fillers. This is similar to the way they use fillers in our medications, not only our pills but our liquid medications, our cough syrups, and pain liquids. Some indicate that they are made on machines that use wheat products and are not carefully cleaned before they begin another batch of medications. It is the same with those lovely sour lemon candies I love. They are coated with this lovely lemony powder. I can eat a bag of them without much thought. That is, thought was suspended until I was awake all night with abdominal pain and suffered the next day with diarrhea, and the next week with DH spots and the itch. Oh boy the itch! It is not a normal itch you know. It is not one that you just scratch for a bit and forget it. You HAVE to scratch it until it draws blood, and then scratch the scab until you have a burning pain like no other. Thankfully we found a Corticosteroid liquid called "Scalpacin". It is an over the counter liquid.
    I was forced to get serious about this search for traces of gluten, but why do they make the product analysis writing so small? Picture me pulling things out of the freezer department of the supermarket and trying to read the product analysis. I cannot leave the door open because the hairs in my nose will freeze and I'm afraid that the department manager will become annoyed, so I end up opening the freezer doors again and again, searching for something I can eat.
    I discovered, like most serious long-term celiacs, that quick, pre-made dinners are something you might as well ignore when shopping. And those wonderful rotisserie chickens - so nice and warm and "fatty" - have to be taken out of the warmer and the label has to be read because most of them seem to contain MSG and other unknowns. Acronyms - initials that scared me because I could not remember which ones were on my "Danger List". Eventually I printed off and laminated a sheet of "OKAY TO GO" and 'DANGER LIST" and took it with me when we shopped. (These lists are available at www.celiac.com.) Spices contain flour to prevent them from sticking, and who knew that baking powder would contain flour, and icing sugar? I was giving away most of my baking products cupboard to my grown daughters. Of course they did not mind and my husband was slowly learning to eat gluten free. Really, he was better for it. I kept telling him that. I seldom made cakes and pies in the beginning. Then, I had so many gluten free baking disasters because I was so used to baking with a "dash of this, and a dash of that", and you cannot do that with celiac baking or you will have a flop. I dug so many cakes out of the pan and threw them in the garbage. The first loaf of bread I tried to make in our break maker, the loaf actually went down instead of rising, and my husband ended up digging it out of the pan with a screw driver!
    We rarely went to restaurants. I was embarrassed at having to give the waiter the third degree about the menu. And so many of the chain restaurants have large tins of pre-made products and the waiters, so time oriented out of necessity, cannot read every label. I now find, to their credit, that a lot of these chain restaurants have a book listing ingredients of each of their menu items. They are great, IF waiters will take the time to read them. A waiter in Hawaii, after grilling him (not the steak) about the "au jus" in the dish, finally came back to our table with my meal. My husband asked him again if he had checked that the meal was gluten free. Although he said it was safe, it became clear that he had not checked. It was that little hesitation that should have "clued us". I would not have spent the next three days of my holiday dastardly sick if I had handled it differently.
    My family physician has told me to emphasize that gluten "is poison to me, and I get very ill from it". He went on to say, "That will scare them because they will be thinking you will be rolling on the floor in the restaurant". Eventually we found one restaurant in our area, a small family owned business where everything was made by the chef/owner, that was safe for me to eat. The chef even came out to see if everything was okay. I was so delighted I wrote an article in our local newspaper about the restaurant and sent information to the Vancouver Chapter of the Canadian Celiac Association because they welcome new information about restaurants and new bakeries offering gluten free baked goods, new information regarding retail grocery stores offering new gluten free products, etc.
    I have learned to avoid caramel because even though I'm told it is not made with flour, it often has other forms of gluten in it that manufacturers are sneaky and not listing, like malt! A big shocker for me was the John Frieda shampoos. I just loved it when the hair lightener products by John Frieda came out.. They had blonde hair lighteners, burgundy hair colors, caramel, and chocolate brown. Oh my, the colors were endless and lovely. I bought the blonde hair products, the anti-frizz, the shine products and sprays. My cupboard was full of John Frieda blonde hair products for the wonderfully expensive streaks in my hair. Why oh why was my hair itching so badly? And the sores, and the blood! Why it was Wheat Germ Oil! And my scalp was alive once again.
    But I had a bigger problem. By this time, my wonderful Dapsone was becoming a danger to me. I had always been told by my dermatologist to assist the DH to dry up by going {5-4-3-2-1 with the Dapsone pills. And if that did not work, doing it again along with yet another prescription pill Prednisone! Out came his trusty prescription pad for Prednisone, {5-4-3-2-1 of Dapsone and Prednisone.
    I was not told however, of the potential side effects of Prednisone, like aching joints and mood swings. But Dapsone is one of the drugs that can cause methemaglobinemia, a blood disorder where the oxygen is taken out of the blood and your oxygen saturation can drop dangerously into the low 80's. I learned this after two hospital admissions into the ICU this year. They used Methane Blue (a potentially lethal mixture if not used correctly) to clean my blood. The oxygen is hidden behind a door somewhere and the Methane Blue helps open those trap doors and releases the oxygen into the blood again. That is how the internist described it to my husband who was sitting terrified in the other room. I had an infusion of two units of whole blood and a four day stay to monitor my oxygen saturation levels and was told I could never use Dapsone again.
    What??!! Dapsone was my life-line; I could never live without Dapsone! Three days without that "stuff" and the dreaded spots were back. I was referred again to a dermatologist, now fifteen years after my diagnosis, and he prescribed Cimetidine, a medication used for stomach disorders. Who would have known? But it works - three times a day that is. Another dratted pill! We purchased a SAT machine (It measures the oxygen saturation of hemoglobin) online from the U.S.A. for $38.00. It is a very good deal. Twice a week we check my SAT levels and if they are 92-93 I consider it okay to continue my Dapsone.
    I have been told if my SAT levels drop below 89 I should go to the Emergency Department because these small machines are not totally accurate. But this little guy has checked out with my physician's SAT machine and the hospital's machine every time; It's a real winner, and a life saver for me! IF you are afflicted with dermatitis herpetiformis and have to take Dapsone regularly you may want to consider purchasing one of these machines. A few shots of Zylocaine for pain, coupled with the Dapsone, and you could be in trouble. Zylocaine, in combination with a few other drugs, can cause Methemaglobinemia.
    I have just listed "some" of the things that surprised (shocked) me when I was a new gluten checker. I am sure you can write in and tell us your "shocking" stories.

  • Recent Articles

    Jefferson Adams
    Celiac.com 06/16/2018 - Summer is the time for chips and salsa. This fresh salsa recipe relies on cabbage, yes, cabbage, as a secret ingredient. The cabbage brings a delicious flavor and helps the salsa hold together nicely for scooping with your favorite chips. The result is a fresh, tasty salsa that goes great with guacamole.
    Ingredients:
    3 cups ripe fresh tomatoes, diced 1 cup shredded green cabbage ½ cup diced yellow onion ¼ cup chopped fresh cilantro 1 jalapeno, seeded 1 Serrano pepper, seeded 2 tablespoons lemon juice 2 tablespoons red wine vinegar 2 garlic cloves, minced salt to taste black pepper, to taste Directions:
    Purée all ingredients together in a blender.
    Cover and refrigerate for at least 1 hour. 
    Adjust seasoning with salt and pepper, as desired. 
    Serve is a bowl with tortilla chips and guacamole.

    Dr. Ron Hoggan, Ed.D.
    Celiac.com 06/15/2018 - There seems to be widespread agreement in the published medical research reports that stuttering is driven by abnormalities in the brain. Sometimes these are the result of brain injuries resulting from a stroke. Other types of brain injuries can also result in stuttering. Patients with Parkinson’s disease who were treated with stimulation of the subthalamic nucleus, an area of the brain that regulates some motor functions, experienced a return or worsening of stuttering that improved when the stimulation was turned off (1). Similarly, stroke has also been reported in association with acquired stuttering (2). While there are some reports of psychological mechanisms underlying stuttering, a majority of reports seem to favor altered brain morphology and/or function as the root of stuttering (3). Reports of structural differences between the brain hemispheres that are absent in those who do not stutter are also common (4). About 5% of children stutter, beginning sometime around age 3, during the phase of speech acquisition. However, about 75% of these cases resolve without intervention, before reaching their teens (5). Some cases of aphasia, a loss of speech production or understanding, have been reported in association with damage or changes to one or more of the language centers of the brain (6). Stuttering may sometimes arise from changes or damage to these same language centers (7). Thus, many stutterers have abnormalities in the same regions of the brain similar to those seen in aphasia.
    So how, you may ask, is all this related to gluten? As a starting point, one report from the medical literature identifies a patient who developed aphasia after admission for severe diarrhea. By the time celiac disease was diagnosed, he had completely lost his faculty of speech. However, his speech and normal bowel function gradually returned after beginning a gluten free diet (8). This finding was so controversial at the time of publication (1988) that the authors chose to remain anonymous. Nonetheless, it is a valuable clue that suggests gluten as a factor in compromised speech production. At about the same time (late 1980’s) reports of connections between untreated celiac disease and seizures/epilepsy were emerging in the medical literature (9).
    With the advent of the Internet a whole new field of anecdotal information was emerging, connecting a variety of neurological symptoms to celiac disease. While many medical practitioners and researchers were casting aspersions on these assertions, a select few chose to explore such claims using scientific research designs and methods. While connections between stuttering and gluten consumption seem to have been overlooked by the medical research community, there is a rich literature on the Internet that cries out for more structured investigation of this connection. Conversely, perhaps a publication bias of the peer review process excludes work that explores this connection.
    Whatever the reason that stuttering has not been reported in the medical literature in association with gluten ingestion, a number of personal disclosures and comments suggesting a connection between gluten and stuttering can be found on the Internet. Abid Hussain, in an article about food allergy and stuttering said: “The most common food allergy prevalent in stutterers is that of gluten which has been found to aggravate the stutter” (10). Similarly, Craig Forsythe posted an article that includes five cases of self-reporting individuals who believe that their stuttering is or was connected to gluten, one of whom also experiences stuttering from foods containing yeast (11). The same site contains one report of a stutterer who has had no relief despite following a gluten free diet for 20 years (11). Another stutterer, Jay88, reports the complete disappearance of her/his stammer on a gluten free diet (12). Doubtless there are many more such anecdotes to be found on the Internet* but we have to question them, exercising more skepticism than we might when reading similar claims in a peer reviewed scientific or medical journal.
    There are many reports in such journals connecting brain and neurological ailments with gluten, so it is not much of a stretch, on that basis alone, to suspect that stuttering may be a symptom of the gluten syndrome. Rodney Ford has even characterized celiac disease as an ailment that may begin through gluten-induced neurological damage (13) and Marios Hadjivassiliou and his group of neurologists and neurological investigators have devoted considerable time and effort to research that reveals gluten as an important factor in a majority of neurological diseases of unknown origin (14) which, as I have pointed out previously, includes most neurological ailments.
    My own experience with stuttering is limited. I stuttered as a child when I became nervous, upset, or self-conscious. Although I have been gluten free for many years, I haven’t noticed any impact on my inclination to stutter when upset. I don’t know if they are related, but I have also had challenges with speaking when distressed and I have noticed a substantial improvement in this area since removing gluten from my diet. Nonetheless, I have long wondered if there is a connection between gluten consumption and stuttering. Having done the research for this article, I would now encourage stutterers to try a gluten free diet for six months to see if it will reduce or eliminate their stutter. Meanwhile, I hope that some investigator out there will research this matter, publish her findings, and start the ball rolling toward getting some definitive answers to this question.
    Sources:
    1. Toft M, Dietrichs E. Aggravated stuttering following subthalamic deep brain stimulation in Parkinson’s disease--two cases. BMC Neurol. 2011 Apr 8;11:44.
    2. Tani T, Sakai Y. Stuttering after right cerebellar infarction: a case study. J Fluency Disord. 2010 Jun;35(2):141-5. Epub 2010 Mar 15.
    3. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    4. Jäncke L, Hänggi J, Steinmetz H. Morphological brain differences between adult stutterers and non-stutterers. BMC Neurol. 2004 Dec 10;4(1):23.
    5. Kell CA, Neumann K, von Kriegstein K, Posenenske C, von Gudenberg AW, Euler H, Giraud AL. How the brain repairs stuttering. Brain. 2009 Oct;132(Pt 10):2747-60. Epub 2009 Aug 26.
    6. Galantucci S, Tartaglia MC, Wilson SM, Henry ML, Filippi M, Agosta F, Dronkers NF, Henry RG, Ogar JM, Miller BL, Gorno-Tempini ML. White matter damage in primary progressive aphasias: a diffusion tensor tractography study. Brain. 2011 Jun 11.
    7. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    8. [No authors listed] Case records of the Massachusetts General Hospital. Weekly clinicopathological exercises. Case 43-1988. A 52-year-old man with persistent watery diarrhea and aphasia. N Engl J Med. 1988 Oct 27;319(17):1139-48
    9. Molteni N, Bardella MT, Baldassarri AR, Bianchi PA. Celiac disease associated with epilepsy and intracranial calcifications: report of two patients. Am J Gastroenterol. 1988 Sep;83(9):992-4.
    10. http://ezinearticles.com/?Food-Allergy-and-Stuttering-Link&id=1235725 
    11. http://www.craig.copperleife.com/health/stuttering_allergies.htm 
    12. https://www.celiac.com/forums/topic/73362-any-help-is-appreciated/
    13. Ford RP. The gluten syndrome: a neurological disease. Med Hypotheses. 2009 Sep;73(3):438-40. Epub 2009 Apr 29.
    14. Hadjivassiliou M, Gibson A, Davies-Jones GA, Lobo AJ, Stephenson TJ, Milford-Ward A. Does cryptic gluten sensitivity play a part in neurological illness? Lancet. 1996 Feb 10;347(8998):369-71.

    Jefferson Adams
    Celiac.com 06/14/2018 - Refractory celiac disease type II (RCDII) is a rare complication of celiac disease that has high death rates. To diagnose RCDII, doctors identify a clonal population of phenotypically aberrant intraepithelial lymphocytes (IELs). 
    However, researchers really don’t have much data regarding the frequency and significance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. Such data could provide useful comparison information for patients with RCDII, among other things.
    To that end, a research team recently set out to try to get some information about the frequency and importance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. The research team included Shafinaz Hussein, Tatyana Gindin, Stephen M Lagana, Carolina Arguelles-Grande, Suneeta Krishnareddy, Bachir Alobeid, Suzanne K Lewis, Mahesh M Mansukhani, Peter H R Green, and Govind Bhagat.
    They are variously affiliated with the Department of Pathology and Cell Biology, and the Department of Medicine at the Celiac Disease Center, New York Presbyterian Hospital/Columbia University Medical Center, New York, USA. Their team analyzed results of TCR-GR analyses performed on SB biopsies at our institution over a 3-year period, which were obtained from eight active celiac disease, 172 celiac disease on gluten-free diet, 33 RCDI, and three RCDII patients and 14 patients without celiac disease. 
    Clonal TCR-GRs are not infrequent in cases lacking features of RCDII, while PCPs are frequent in all disease phases. TCR-GR results should be assessed in conjunction with immunophenotypic, histological and clinical findings for appropriate diagnosis and classification of RCD.
    The team divided the TCR-GR patterns into clonal, polyclonal and prominent clonal peaks (PCPs), and correlated these patterns with clinical and pathological features. In all, they detected clonal TCR-GR products in biopsies from 67% of patients with RCDII, 17% of patients with RCDI and 6% of patients with gluten-free diet. They found PCPs in all disease phases, but saw no significant difference in the TCR-GR patterns between the non-RCDII disease categories (p=0.39). 
    They also noted a higher frequency of surface CD3(−) IELs in cases with clonal TCR-GR, but the PCP pattern showed no associations with any clinical or pathological feature. 
    Repeat biopsy showed that the clonal or PCP pattern persisted for up to 2 years with no evidence of RCDII. The study indicates that better understanding of clonal T cell receptor gene rearrangements may help researchers improve refractory celiac diagnosis. 
    Source:
    Journal of Clinical Pathologyhttp://dx.doi.org/10.1136/jclinpath-2018-205023

    Jefferson Adams
    Celiac.com 06/13/2018 - There have been numerous reports that olmesartan, aka Benicar, seems to trigger sprue‐like enteropathy in many patients, but so far, studies have produced mixed results, and there really hasn’t been a rigorous study of the issue. A team of researchers recently set out to assess whether olmesartan is associated with a higher rate of enteropathy compared with other angiotensin II receptor blockers (ARBs).
    The research team included Y.‐H. Dong; Y. Jin; TN Tsacogianis; M He; PH Hsieh; and JJ Gagne. They are variously affiliated with the Division of Pharmacoepidemiology and Pharmacoeconomics, Department of Medicine, Brigham and Women's Hospital and Harvard Medical School in Boston, MA, USA; the Faculty of Pharmacy, School of Pharmaceutical Science at National Yang‐Ming University in Taipei, Taiwan; and the Department of Hepato‐Gastroenterology, Chi Mei Medical Center in Tainan, Taiwan.
    To get solid data on the issue, the team conducted a cohort study among ARB initiators in 5 US claims databases covering numerous health insurers. They used Cox regression models to estimate hazard ratios (HRs) and 95% confidence intervals (CIs) for enteropathy‐related outcomes, including celiac disease, malabsorption, concomitant diagnoses of diarrhea and weight loss, and non‐infectious enteropathy. In all, they found nearly two million eligible patients. 
    They then assessed those patients and compared the results for olmesartan initiators to initiators of other ARBs after propensity score (PS) matching. They found unadjusted incidence rates of 0.82, 1.41, 1.66 and 29.20 per 1,000 person‐years for celiac disease, malabsorption, concomitant diagnoses of diarrhea and weight loss, and non‐infectious enteropathy respectively. 
    After PS matching comparing olmesartan to other ARBs, hazard ratios were 1.21 (95% CI, 1.05‐1.40), 1.00 (95% CI, 0.88‐1.13), 1.22 (95% CI, 1.10‐1.36) and 1.04 (95% CI, 1.01‐1.07) for each outcome. Patients aged 65 years and older showed greater hazard ratios for celiac disease, as did patients receiving treatment for more than 1 year, and patients receiving higher cumulative olmesartan doses.
    This is the first comprehensive multi‐database study to document a higher rate of enteropathy in olmesartan initiators as compared to initiators of other ARBs, though absolute rates were low for both groups.
    Source:
    Alimentary Pharmacology & Therapeutics

    Jefferson Adams
    Celiac.com 06/12/2018 - A life-long gluten-free diet is the only proven treatment for celiac disease. However, current methods for assessing gluten-free diet compliance are lack the sensitivity to detect occasional dietary transgressions that may cause gut mucosal damage. So, basically, there’s currently no good way to tell if celiac patients are suffering gut damage from low-level gluten contamination.
    A team of researchers recently set out to develop a method to determine gluten intake and monitor gluten-free dietary compliance in patients with celiac disease, and to determine its correlation with mucosal damage. The research team included ML Moreno, Á Cebolla, A Muñoz-Suano, C Carrillo-Carrion, I Comino, Á Pizarro, F León, A Rodríguez-Herrera, and C Sousa. They are variously affiliated with Facultad de Farmacia, Departamento de Microbiología y Parasitología, Universidad de Sevilla, Sevilla, Spain; Biomedal S.L., Sevilla, Spain; Unidad Clínica de Aparato Digestivo, Hospital Universitario Virgen del Rocío, Sevilla, Spain; Celimmune, Bethesda, Maryland, USA; and the Unidad de Gastroenterología y Nutrición, Instituto Hispalense de Pediatría, Sevilla, Spain.
    For their study, the team collected urine samples from 76 healthy subjects and 58 patients with celiac disease subjected to different gluten dietary conditions. To quantify gluten immunogenic peptides in solid-phase extracted urines, the team used a lateral flow test (LFT) with the highly sensitive and specific G12 monoclonal antibody for the most dominant GIPs and an LFT reader. 
    They detected GIPs in concentrated urines from healthy individuals previously subjected to gluten-free diet as early as 4-6 h after single gluten intake, and for 1-2 days afterward. The urine test showed gluten ingestion in about 50% of patients. Biopsy analysis showed that nearly 9 out of 10 celiac patients with no villous atrophy had no detectable GIP in urine, while all patients with quantifiable GIP in urine showed signs of gut damage.
    The ability to use GIP in urine to reveal gluten consumption will likely help lead to new and non-invasive methods for monitoring gluten-free diet compliance. The test is sensitive, specific and simple enough for clinical monitoring of celiac patients, as well as for basic and clinical research applications including drug development.
    Source:
    Gut. 2017 Feb;66(2):250-257.  doi: 10.1136/gutjnl-2015-310148.